ESSAY; She Died the Same Way She Lived: Planning Well in Advance

By CAROL LEVINE

Published: December 6, 2005

My mother believed in the verities of life. Don't wear white after Labor Day. A phone call does not replace a thank-you note. Everything should have a place, and everything should be in its place.

That is why my sister and I were not surprised, after Mom died, to find in her closet neat rows of brown, beige, tan, taupe and ecru handbags to match carefully labeled boxes of brown, beige, tan, taupe and ecru shoes.

Nor was it surprising that in each of her handbags was a copy of her advance directive and health care proxy. In this respect she was an entirely modern woman. She did not want to leave the manner of her death up to the vagaries of the health care system.

Although in good health until age 89, she repeatedly told us that she did not want to die like our father, after a grueling and ultimately failed research protocol for a lethal leukemia, or like her demented sister, being shuttled back and forth between nursing home and hospital. She trusted me as her health care proxy to protect her from a painful and dehumanized death. Our discussions, backed up by the papers in her handbags, gave her a sense of security and comfort.

She would have been horrified to learn that the very idea of planning for medical treatment at the end of one's life is now seriously questioned by many doctors, lawyers and philosophers. ''Don't listen to them,'' she would have said. ''Listen to me!''

Some of the arguments, most recently put forth by the President's Council on Bioethics, question the usefulness of planning. According to these arguments, no one can foretell the precise circumstances in which end-of-life decisions will be made. Furthermore, advance directives are not often transmitted to hospitals and doctors. Finally, even when they are available, advance directives have little effect on surrogate decision-making.

More subtly, some argue that the very bases of these directives -- patient autonomy and informed consent -- are flawed. In its recent report, the President's Council on Bioethics said, ''Written 'choices' are imposed on individuals who are no longer free to change their minds.''

The council recommends that surrogate decision makers ignore advance directives if they believe that the person who made them is not the same person now -- say, a ''happy'' demented person. According to the report, instead of trying to maintain an illusive autonomy, individuals should accept future dependency and cede their life-and-death decisions to someone who will feel free to overrule prior declarations.

When my mother's illness was diagnosed as colon cancer, she agreed to surgery but not to chemotherapy. The cancer had metastasized to her liver, and further aggressive treatment was not likely to extend her life but would have certainly caused significant distress.

I might have tried to take her to New York to see a Big Doctor at a Big Hospital. ''Don't ship me away,'' she declared. And so she stayed in her orderly apartment in the small upstate town she knew so well.

From New York and Montana, my sister and I helped Mom enroll in hospice and hire a group of home aides to provide round-the-clock care. With excellent nursing and personal care, good nutrition and devoted attention from all of us, she never had to be admitted to a hospital and lived a full year after having surgery.

She reached her 90th birthday, her final goal. I held her hand and whispered the ''Shema,'' the Jewish prayer that is supposed to be the last words a person utters, as she died peacefully at home.

Those who argue against advance directives might say my mother and I got it wrong. My mother got it wrong because she specified her wishes in an advance directive. I got it wrong because I was faithful to her wishes without considering she may have changed her mind.

My mother never changed her mind -- ever. As disease progression affected her body and mind, she became not a different person, but more of the person she had always been. Even as her memory failed, she insisted on having her lunch at a table set for guests. No sensible shoes, no leftovers in the refrigerator, no unpaid bills.

It is inconceivable to me that she would have wavered on something as crucial as the way she spent her last months. Philosophical and political arguments notwithstanding, in accepting her death on her terms I believed that I honored her life.